Following is my third and final critical annotation of the semester.

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Before I began reading Fred Pelka’s What We Have Done: An Oral History of the Disability Rights Movement, I’d expected that, in order to keep myself from drowning in dry historical detail, I’d have to pick and choose my way through its 600-plus pages. I was pleasantly surprised, then, to find myself reading the book into the wee hours of the morning as though it were a novel. What We Have Done combines an exhaustive rendering of historical events — the who, why, what, when, where, and how of the disability rights movement — with first-person accounts by the people who played leading roles in it. An independent scholar and the author of The ABC-CLIO Guide to the Disability Rights Movement, Pelka artfully weaves the voices of disabled activists through his historical narrative, giving form to the principle that underlies the disability rights movement: Nothing about us, without us. The result is a work that covers the framing of disability as a civil rights issue from the founding of the National Federation for the Blind (NFB) and the American Federation of the Physically Handicapped (AFPH) in 1940 through the passage of the Americans with Disabilities Act (ADA) in 1990.

For me, the most compelling material in Pelka’s book concerns the institutionalization of disabled people. I have a personal interest in this subject: my great-aunt Sarah, who was autistic and had cerebral palsy, was incarcerated in Massachusetts state institutions for most of her short life and died of tuberculosis in the Foxborough State Hospital in 1934, at the age of 25. Placed in institutional care at the age of eight, Sarah was forgotten for generations until I discovered her on a census form 75 years after her death (Disability and Representation 2012). I now have a passion for bringing the conditions of her life out of the shadows and honoring her as an autistic and disabled person. I am always shocked, then, to hear people say that autism is an entirely new condition that didn’t exist in past generations. When I hear such things, I feel as though my great-aunt has been relegated to obscurity a second time.

In reading Pelka’s book, though, I found a wealth of historical information that helps to explain exactly why autistic people like my great-aunt Sarah were invisible in their day and why their lives are still invisible now. Central to our cultural forgetting was the eugenicist argument that disabled people were a physical and moral threat to society; this belief resulted in their segregation and institutionalization. One of the reasons that institutionalization became the only option for many was that, until 1975, disabled children did not have a legally protected right to attend the public schools. Thus, many of them were placed into institutions in which abuse, squalor, and disease made their already vulnerable lives all the more fragile, and from which few emerged, except in death.

One of the people who has been most vocal about the purported impossibility of autistic people existing in large numbers before the current generation is Anne Dachel, media editor for the organization Age of Autism. Along with her colleagues, Ms. Dachel believes autism to be a recent “epidemic” caused by vaccination (Age of Autism 2012). She claims that because one doesn’t find a great many elders with autism in our nursing homes, autism as we now know it did not exist in past generations. In a blog post this past July, Ms. Dachel challenges us to explain where all the autistic elders are:

PLEASE SHOW US THE MISDIAGNOSED, UNDIAGNOSED 40, 60, and 80 YEARS OLDS WITH AUTISM. I don’t mean ones with what could be termed high functioning or Asperger’s. I don’t mean autistic adults like the ones they supposedly found in Great Britain who were able to answer survey questions. I want to see the people in our nursing homes and institutions who display the same signs of classic autism that we see in so many of our children. I want to see adults who are non-verbal, in diapers, and flapping their hands endlessly. I want to see autistic adults who’ve endured years of the seizures, sleep disorders, bowel disease and life-threatening allergies that so many of our autistic children have. I want to see adults whose history includes regression—adults who were born healthy and were developing normally until they suddenly and dramatically lost learned skills, started stimming and lost eye contact. This is what countless thousands of children with autism have gone through. SHOW US THESE SAME ADULTS. (Anne Dachel: Autism and the Media 2012)

Of course, the idea that someone could go to a nursing home as an elder implies that the person was once a part of a community. It is ironic, then, that Ms. Dachel is looking for people born between 1930 and 1975 — years in which disabled people, far from being integrated into their communities, were ruthlessly segregated from society, denied the right to an education, and consigned to a “disability gulag,” where they underwent enormous suffering, deprivation, and abuse (Pelka 2012, 49).

In order to understand why one doesn’t find large numbers of autistic adults in our nursing homes, one must begin by noting the degree to which disabled people were incarcerated and otherwise kept out of public view for much of the twentieth century. In the early part of the century, the eugenicist notion that disabled people were responsible for all the problems of society put disabled people in state institutions (Pelka 2012, 9). People with disabilities were considered a social evil that would destroy society just as disease would destroy a body (Pelka 2012, 11). They were therefore quarantined, kept away from nondisabled people, and stripped of their right to travel freely and to associate with others. As attorney Tim Cook explains:

[I]n virtually every state, in inexorable fashion, people with disabilities — especially children and youth — were declared by state lawmaking bodies to be unfitted for companionship with other children,’ a ‘blight on mankind,’ whose very presence in the community was ‘detrimental to normal’ children, and whose ‘mingling… with society’ was ‘a most baneful evil.’ Persons with severe disabilities were considered to be ‘anti-social beings’ as well as a ‘defect…[that] wounds our citizenry a thousand times more than any plague.’ In conclusion, then, ‘persons with disabilities were believed to simply not have the  ‘rights and liberties of normal people.’ (Pelka 2012, 11)

Until the 1960s, when autism was finally defined as a condition distinct from psychosis and schizophrenia (Fombonne 2003, 1), autistic people like my great-aunt Sarah were misdiagnosed with mental illness. In fact, Sarah had diagnoses of both intellectual disability (she was diagnosed as a “moron”) and “dementia praecox,” the old term for schizophrenia (Disability and Representation 2012). People like her would have had no hope of escape from an institution — not into a nursing home, not into a group home, and not into a private home. As Pelka notes: “Because the consensus of ‘expert opinion’… was that people with disabilities, particularly those labeled ‘mentally retarded’ or ‘mentally ill,’ should be institutionalized, having a disability often meant lifelong imprisonment” (Pelka 2012, 48).

One of the social conditions that made institutionalization possible was a series of laws, in almost every state, that kept children with disabilities out of the public schools; such children, according to attorney Thomas K. Gilhool, were considered “uneducable and untrainable” (Pelka 2012, 139). Moreover, laws in some states even allowed school superintendents to take children out of their homes, against the will of their parents, and place them in institutions (Pelka 2012, 139). These institutions represented a powerful lobbying group that, according to Pelka, “actively impeded the development of community-based services and integrated public school education” (Pelka 2012, 49). Such a situation did not find remedy until the 1971 consent decree issued in the case of PARC v. Pennsylvania, which found that all children have a right to a free public education (Pelka 2012, 26). This court case ultimately resulted in the passage of the Education for All Handicapped Children Act of 1975, the precursor to the Individuals with Disabilities Education Act (IDEA) (Pelka 2012, 137). Thus, one did not see many children with autism in the public schools until after 1975 because, until then, they did not have a legal right to access a free public education. The only alternative for many children was institutionalization.

Once institutionalized, children lived in conditions that made it unlikely that they would ever survive to old age or leave the facility. The late Gunnar Dybwad, an attorney and, from 1957 to 1963, the executive director of the National Association for Retarded Children, had extensive knowledge of what befell disabled people in state care from the 1930s through the 1960s. In Pelka’s book, he describes the nightmarish conditions in state institutions, including the overcrowding, the stench of human feces, the unbearable levels of noise, and the food unfit to eat (Pelka 2012, 50-51). No one made an effort to separate children from adults (Pelka 2012, 51), and sexual abuse was rampant (Pelka 2012, 52). No oversight from state or federal agencies was in place (Pelka 2012, 51), resulting in situations in which “no one… was safe and secure” (Pelka 2012, 53) and in which children were “brutally beaten” (Pelka 2012, 53).  Parents were not allowed into the facilities to see the living conditions of their children (Pelka 2012, 52) and had no idea of what was happening to them. For decades, health professionals countenanced the misery at these institutions, leading Dybwad to note that “it might be appropriate if [mental retardation professionals] started each annual meeting with a session where they would confess their sins. Because they all knew what was going on, and they never did anything about it” (Pelka 2012, 51).

Such conditions lasted well into the 1970s. Richard Bronston, a physician who worked at the Willowbrook State School and Hospital on Staten Island describes a situation of “[w]retchedness and suffering and insanity and inhumanity” (Pelka 2012, 180). The residents at Willowbrook, he remembers, lived in an environment in which they experienced rampant disease, serious injuries, constant noise, rashes from caustic floor cleaners, burns from falling asleep against the radiators, and amputations due to fungal infections (Pelka 2012, 176-178). Physical assault, sexual abuse, and pregnancy due to rape were common (Pelka 2012, 179). Far from having the opportunity to live to old age and graduate to nursing home care, residents at Willowbrook were “statistically more likely to be assaulted, raped, or murdered than in any other neighborhood in New York City” (Pelka 2012, 175). In fact, toward the end of his tenure, Bronston oversaw a ward with “a death rate that was nine times the death rate of the city of New York” (Pelka 2012, 179). It is unlikely that most autistic adults with the symptoms of which Ms. Dachel speaks — “seizures, sleep disorders, bowel disease and life-threatening allergies” — could survive to old age in such conditions (Anne Dachel: Autism and the Media, 2012). If Ms. Dachel would like to know where these adults are, I invite her to visit the cemeteries on the grounds of former state institutions. She will very likely find them there.

When I was a child growing up in the 1960s and 1970s, the only disabled children I knew in the public school system were diagnosed as “mildly mentally retarded.” I never knew any nonverbal autistic children. I never knew any children who used wheelchairs. I never knew any blind or deaf children, and I never knew any children with acute mental illness. These children were invisible to me not because they did not exist, but because most of them existed elsewhere, in a world apart. Some went to separate schools for disabled children, some remained at home, and many suffered in institutions. “Out of sight, out of mind” was the paradigm by which disabled people in past generations were segregated and incarcerated. Let us not forget them now.

References

Age of Autism. “A Letter from the Editor.” http://www.ageofautism.com/a-welcome-from-dan-olmste.html. Accessed November 6, 2012.

Anne Dachel: Autism and the Media. “The Boston Globe covers up autism.” http://annedachel.com/2012/07/25/the-boston-globe-covers-up-autism/. July 25, 2012. Accessed November 6, 2012.

Disability and Representation. “Reclaiming Memory: Searching for Great-Aunt Sarah.” http://www.disabilityandrepresentation.com/2012/10/30/reclaiming-memory-searching-for-great-aunt-sarah/. October 30, 2012. Accessed November 6, 2012.

Fombonne, Eric. “Modern Views of Autism.” The Canadian Journal of Psychiatry (September 2003): 1-4. http://ww1.cpa-apc.org:8080/publications/archives/cjp/2003/september/guesteditorial.asp.

Pelka, Fred. What We Have Done. Amherst, MA: University of Massachusetts Press, 2012.

© 2012 by Rachel Cohen-Rottenberg

Following is my second critical annotation of the semester.

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In her 1997 book, Seeing a Color-Blind Future: The Paradox of Race, Patricia Williams reflects upon the contradiction between our cultural insistence that color does not matter and the material reality of a world in which the construction of race has everything to do with one’s social, political, and economic experience. As I meditated on Williams’ words about the social construct and experience of race, I found myself noticing parallels to the social construct and experience of disability. While Williams does not include disability as a category of critical analysis, and while it would be appropriative to suggest that the experiences of race and disability are exactly the same, it is fair to say that similar issues come into play: the call to seeing the person, not the physical difference; the ways in which minority status is visible for critique, while the perspective of the majority becomes “natural” and fades into the background; the imperative to “pass”; the invitation to speak to one’s minority experience only for the benefit of those in the majority; the experience of being stared at but not seen clearly; and the necessity of battling against “scientific” representations that have little to do with lived experience. Unfortunately, while Williams protests the ways in which people can use one form of prejudice to argue against another, her analysis is marred by the fact that she uses pejorative disability metaphors in the service of her arguments against the insidious nature of racism.

An African-American professor of law at Columbia University and the author of the column “Diary of a Mad Law Professor” for The Nation, Williams is a prolific writer who has spent over 20 years tackling questions of social justice, race, ethnicity, class, and gender. She begins her book, however, with a personal story. She describes an incident at her son’s nursery school — an incident that derived from his white teachers’ well-intentioned imperative to be “color-blind,” but that ended up erasing the nature of her son’s racial experience. For most of his nursery school year, Williams tells us, his teachers believed that her son was color-blind. When asked what color the grass was, for example, he would respond that he either didn’t know or that it didn’t matter. After taking him to have his eyes examined and finding that he could see color perfectly well, Williams began to investigate why he was refusing to identify it (Williams 1997, 3). She learned that some of the children at his predominantly white school had been fighting about whether black people could be the “good guys” in playtime scenarios, and that the teachers had insisted that “it doesn’t matter…whether you’re black or white or red or green or blue” (Williams 1997, 3). She interpreted her son’s extreme refusal to identify color as an index of his anxiety that the teachers’ words would a) erase his own experience of color and b) deny his truth about the ways in which color matters in his relationships with others (Williams 1997, 4).

To put the imperative toward color-blindness another way: his teachers were telling the class to “see the person, not the color” in the same way that some in the disability community encourage able-bodied people to “see the person, not the disability” (Disability and Representation, 2012). In both cases, the imperative to see past the physical attribute, the insistence that the physical attribute does not matter, and the attempt to reach across difference by disregarding it derive from a desire to bring greater harmony to a world of injustice. The problem in both cases, of course, is that race and disability matter in that they are both social constructs that determine experience. Instead of taking a shortcut around the fact of race, Williams believes, we need to engage the experience of race in our culture in all of its manifestations (Williams 1997, 4-5). I would argue that exactly the same is true for disability. Until disability matters, not just as an indicator of personal experience, but also as a civil rights issue in which unjust social relations result in specific types of personal experience, there can be no significant progress toward the day when disability becomes a signifier of difference rather than a symbol of stigma and oppression.

One of the reasons, perhaps, that people rush to deny race and disability is that whiteness and normalcy are themselves invisible. Williams draws from whiteness theory when she writes that whiteness is an unmarked, de-racialized category; our culture does not tend to see whiteness as a race at all (Williams 2007, 6-7).  Phil Smith extrapolates from whiteness theory to posit normal theory; for him, normalcy is analogous to whiteness in that it is simply an uncritiqued given and is considered “natural” (Smith 2004, 13).  Perhaps, for those who are white and able-bodied, the desire to erase race and disability derives from a misplaced attempt to level the playing field. Perhaps people who insist that we “see the person, not the difference” are resting their view on the assumption that, because whiteness and normalcy are invisible, then race and disability should be invisible, too. Of course, the solution is not to make race and disability invisible, but to make whiteness and normalcy visible as categories of analysis. Until then, the invisibility of whiteness and normalcy will place people of color and disabled people in a realm apart. Williams writes that the invisibility of whiteness “permits whites to entertain the notion that race lives ‘over there’ on the other side of the tracks, in black bodies and inner-city neighborhoods, in a dark netherworld where whites are not involved” (Williams 1997, 7). As is the case with race, our cultural attitude toward disability is that it happens to someone else — someone who lives in a world apart, segregated from view (Murphy 1990, 110-111).

For both people of color and people with disabilities, this impetus toward invisibility takes the shape of pressure to “pass” so as not to intrude one’s difference upon the majority. Williams recounts the experience of her light-skinned cousin who could pass for white but identified herself in college as a member of the black law students’ association (Williams 1997, 53-54). When one of her professors found out that she had “outed” herself, Williams writes, he “grew agitated, annoyed, even confrontational”:

Why would she do such a thing, he wanted to know; why would she ‘label’ herself when she was so light-skinned and could so easily pass for white? My cousin was struck by how offended he was; he seemed to be implying that she had a obligation or a duty to pass and that her failure to do so was both impolitic and impolite. (Williams 1997, 54)

An analogous imperative to pass is the lot of disabled people who are able to hide their disabilities, as evidenced by Tobin Siebers’ remark that people with disabilities “must try to be as able-bodied as possible all the time” (Siebers 2011, 10). After reading Williams’ story about her cousin’s experience, I asked my circle of disabled friends whether anyone had had a similar experience about passing as nondisabled. A number of people had stories to tell. One autistic woman described her husband’s discomfort at her wearing bright yellow noise-blocking headphones and his worry that she was “disadvantaging” herself by choosing not to pass (Personal communication, 2012). Another autistic woman said that she had been accused of being impolite for not passing; after telling someone that her senses were overwhelmed and that she needed to find a quiet spot to recharge, the other person insisted that she continue passing, and chided her by saying “Lisa, you may have Aspergers, but you are intelligent enough to not act autistic” (Personal communication, 2012).

As a result of the cultural imperative to see race and disability as invisible, both are subject to what Williams calls “the forbidden gaze” (Williams 1997, 9). Children have a natural curiosity about difference (Brown 2010, 183) and, while our culture teaches them not to stare at non-normative people, it does not teach them how to engage difference (Williams 1997, 9). Because an interest in difference is both natural and culturally forbidden, people of color and disabled people find themselves in the paradoxical position of having to expose the nature of their experience for the use of others, right up until the point that their experience challenges the comfort of those doing the asking. People of color, Williams notes, “are ground down by the pendular stresses of having to explain what it feels like to be You … or, alternatively, placed in a kind of conversational quarantine of muteness” (Williams 1997, 9). Disabled people, too, find themselves in a similar quandary: they are either subject to questions from strangers about how they came to be disabled (Garland-Thomson 2000, 334) or they are ignored altogether (Murphy 1990, 118). In both cases, the center of gravity is the majority person. Minority people either perform for the majority person’s benefit, or they need to be quiet.

Interestingly enough, for both people of color and disabled people, the “forbidden gaze” turns into its opposite: intrusive staring. Williams refers to this propensity to stare as “racial voyeurism” (Williams 1997, 17). In one example among many, she describes the way in which tour buses in New York City bring tourists to black churches in order to “see the show” (Williams 1997, 22). Four hundred tourists arrive late, jockey for position for the best camera angles, photograph African Americans in prayer, and then disrupt the service by leaving en masse so as not to miss lunch (Williams 1997, 22-25). Williams considers the photographs a way of perpetuating the voyeuristic experience of watching “exotics”; she describes each picture as a “flat, dry, matted photographic relic to be spread out upon the coffee tables of faraway homes; the open-mouthed exotics, frozen in raucous song….” (Williams 1997, 25). Williams’ reflections on the voyeuristic nature of photography bring to mind Rosemarie Garland-Thomson’s statement that “photography authorizes staring” (Garland-Thomson 2002, 58) at disabled people, including those whom nondisabled people consider “wondrous” (Garland-Thomson 2002, 59-61) or “exotic” (Garland-Thomson 2002, 59). Through the eye of the camera, apparently, one can stare and circumvent the stricture against doing so.

And yet for all of this voyeurism, majority people often cannot clearly see the experience of race and disability at all. Williams recounts the discomfort of a colleague who was the only African-American attorney at a business luncheon where the waitstaff was entirely African-American. When the attorney mentioned to her white colleagues how uncomfortable she felt sitting among white professionals while being waited on by other people of color, her colleagues responded with profuse apologies for their choice of venue, all the while making it clear that they could not see the class barriers and social discomfort that were so painfully apparent to her (Williams 1997, 26-27). Siebers makes a similar observation about the experience of disabled people perceiving an architectural or social barrier that able-bodied people cannot see: “When we come to a barrier, we realize that our perception of the world does not conform to theirs, although they rarely have this realization. This difference in perception is a social barrier equal to or greater than any physical barrier…” (Siebers 2011, 51).  In both cases, people in the minority are vividly aware of a core feature of their experience that is utterly invisible to those in the majority.

For both people of color and disabled people, the experience of not being seen properly sometimes takes the form of distorted representations in the guise of science —  representations that rest on an ignorance of the daily lives and experiences of the people under study. Williams laments the way in which studies setting out to prove the genetic inferiority of black people periodically surface (Williams 1997, 51). Not only are the studies prejudicial, Williams notes, but they are also difficult to argue against; because they dress themselves up in the language of science and quantitative research, any rebuttal, in order to appear credible, must wear the same garb:

One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so… Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve. (Williams 1997, 49-50)

As Williams asserts, appeals to experience simply do not have a suitable degree of authority to counter anything that poses as science. Her analysis here reminds me of the charge of narcissism leveled at disabled people — the accusation that disability automatically renders one narcissistic  — which is supposedly supported by the “science” of psychological research (Siebers 2011, 38-40). The parallel between racist pseudo-science and the pathologization of disability is telling, as is the difficulty of arguing against the “science” by bringing to bear experience that is not quantifiable. How does one use charts and graphs to prove empathy, or interest in others, or socially imposed suffering? How does one use quantitative measures to prove more than a small fraction of intelligence, talent, or insight?

Despite the fact that people of color and people with disabilities experience similar systems of oppressive representation, Williams does not pose disability as a critical category in Seeing a Color-Blind Future. She focuses on the intersections of race, ethnicity, gender, and class, and she notes the ways in which one form of prejudice is sometimes brought to bear in order to fight another; she calls this phenomenon “battling biases” (Williams 1997, 32). As an example of this conflict, she cites her experience of watching a counter person accuse a homeless customer of misogyny as a cover for her own class prejudice against him (Williams 1997, 31-32), and she concludes that this “revolving door of revulsions” is one of the ways in which prejudice remains entrenched (Williams 1997, 32).

Ironically enough, though, Williams engages in “battling biases” herself, using pejorative disability metaphors in order to analyze ways to break through other forms of prejudice. For example, she writes that “the eradication of prejudice, the reconciling of tensions across racial, ethnic, cultural, and religious lines, depends upon eradicating the little blindnesses, not just the big” (Williams 1997, 61), using blindness as a metaphor for a systemic failure to perceive the issues with which minority people struggle. In the same paragraph, she uses paralysis as a pejorative, speaking of the “paralyzing anxiety of  well-meaning ‘white guilt’” as a metaphor for recalcitrance and lack of progress on race relations (Williams 1997, 61). In fact, she speaks of her son being pathologized as color-blind for his racial experience (Williams 1997, 5), but she doesn’t seem to realize that disabled people are equally pathologized for our disability experience, and that she is helping to perpetuate that pathologizing impulse.

An understanding of the commonalities between the experience of race and the experience of disability might have helped Williams bring disability into critical focus as a category of oppression and illuminate the ways in which both people of color and disabled people must struggle against similar obstacles. She might have helped make clear that disability, like race, is not simply a question of bodily difference, but an expression of a political and social experience. If Williams had brought disability into her analysis, she might have come to see that disability, like race, is an issue of civil rights and that, rather than deflecting our gaze from it, we must fully engage it.

References

Brown, Lerita M. Coleman. “Stigma: An Enigma Demystified.” In The Disability Studies Reader, edited by Lennard J. Davis, 179-192. New York, NY: Routledge, 2010.

Disability and Representation. “The Problem with Person-First Language: What’s Wrong with This Picture?” http://www.disabilityandrepresentation.com/2012/05/30/the-problem-with-person-first-language-whats-wrong-with-this-picture/. May 30, 2012. Accessed May 30, 2012.

Garland-Thomson, Rosemarie. “Staring Back: Self-Representations of Disabled Performance Artists.” American Quarterly 52, no. 2 (Jun., 2000): 334-338. http://www.jstor.org/pss/30041845.

Garland-Thomson, Rosemarie. “The Politics of Staring: Visual Rhetorics of Disability in Popular Photography.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 56-75. New York, NY: Modern Language Association of America, 2002.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1997.

© 2012 by Rachel Cohen-Rottenberg

Following is my first critical annotation of the semester.

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In his 2011 book Disability Theory, Tobin Siebers raises a number of issues critical to disability studies. Siebers addresses the questions of how disability theory and other forms of critical theory can challenge and inform one another, how disability theory can move past the poststructuralist position that all experience is simply a linguistic construct and give voice to the embodied experience of disability, and how identity politics can move the disability rights movement forward in its struggle for universal access. Underpinning all of these issues are two basic questions: How do we overturn the medicalized representation of disability that portrays impairment as a purely individual matter of physical functioning? And what strategies can we use for representing disability, in Simi Linton’s words, as “a social, political, and cultural phenomenon” (Linton 1998, 133)?

In answering these questions, Siebers explores two related lines of thought. First, he addresses the issue of how to redefine disability identity not as the property of an individual, but as a form of social theory that represents the social and political experience of disabled people. Then, he argues for a paradigm that addresses itself not to individual human bodies, but to the shape, form, and function of the archetypal body for whom our culture is constructed — the body that is welcome in public spaces, the body that has the right to consensual sexual activity, the body that signifies human worth. He concludes that the only way to ensure human rights for disabled people is to represent disability not as an individual calamity, but as the common inheritance of all human beings whose bodies are frail and vulnerable, and who depend upon one another, throughout their lives, for protection and support.

As a professor specializing in disability studies in the departments of Arts and Design and English Language and Literature at the University of Michigan, Siebers concerns himself, first and foremost, with the question of why disabled people are oppressed in our culture. The answer lies in what he calls the “hyperindividualization” of disability (Siebers 2011, 45). Our society, he notes, represents ability as a generalized human trait; in fact, ability is one of the markers of humanity (Siebers 2011, 10). Disability, on the other hand, becomes an individual trait, belonging to unfortunate persons in their particularity, but not representative of humanity as a whole (Siebers 2011, 10). I find this differentiation between ability and disability particularly useful in thinking about what Robert Murphy refers to as the “quasi-human” status of disabled people (Murphy 1990, 110). Does the fact that our culture views disability as a feature of individuals work against seeing disability and humanity as synonymous? After all, if disability is not a part of shared humanity, then it places human beings with disabilities outside of the collective of humanity. The status of the disabled outsider is clear, for example, in the work of Simon Baron-Cohen, who writes that because of an alleged empathy deficit, autistic people are lacking “one of the quintessential abilities that makes us human” (Baron-Cohen 2001, 3).

As became apparent to me in reading Siebers’ discussion of the individualization of disability, the dehumanizing trope of autistic people lacking in empathy is just one iteration of a larger canard against disabled people in general: the charge of narcissism. While Siebers does not specifically address the characterization of autism as an empathy disorder, he points out that the psychological literature is rife with the idea that disability and suffering (nearly always considered synonymous) render disabled people narcissistic; because of their impairments, the literature alleges, disabled people are self-absorbed, trapped in a world of their own, uninterested in anyone else, and unable to love (Siebers 2011, 38-40). Narcissism, much like the autism, becomes an expression of a pathologized individualism. Therefore, when people with disabilities attempt to communicate their pain, advocate for assistance, or struggle against their oppression, they face the charge of being not only hopelessly trapped in their self-absorbed individuality, but also fully responsible for the responses that ensue (Siebers 2011, 34-35). This form of blaming the victim is familiar to those of us who have heard the oft-repeated explanation that a parent or caregiver who kills a disabled person does so under the pressure of the person’s purportedly limitless demands. For example, after the murder of four-year-old Daniel Corby, a local ABC affiliate reported that his mother “was a stay-at-home mother pushed to the edge handling a difficult child with autism” (ABC10 News 2011). The victim becomes responsible for the violence that someone else perpetrates. As Siebers notes, “In short, this is the logic: we killed him, but he made us do it… A more sinister form of violence could not be imagined” (Siebers 2011, 44-45).

It is the hyperindividualization of disability, Siebers believes, that makes disabled people so vulnerable — physically, socially, and politically. I’ve long felt that if others see a person as simply a single individual, they see that person fully alone, unshielded by any group, and available for victimization. Until I discovered the disability community and found out that I was not alone in my experiences, I saw myself as similarly isolated and similarly vulnerable. In this, I am not unique. The distorted perceptions of others, combined with a distorted perception of the self, create the cultural representation of a disabled person who is always an individual, alone and apart. Such a representation helps to create an environment in which disabled people are easily victimized:

[T]he deaf boy on the bus may be entitled to individualized educational planning and medical services, but this special treatment, since it is based on “special rights” and not “civil rights,” exposes him to great isolation and suffering because it ends by symbolizing his individuality as such. (Siebers 2011, 45)

As Siebers notes, the emphasis on disabled people having “special rights” (accruing to individuals) rather than “civil rights” (accruing to members of a group) leaves them particularly vulnerable, because it takes them outside the collective humanity of others and, therefore, outside the protection afforded by the body politic

In order to create a theory of the body that moves past the disempowering individualization of disability, Siebers begins by viewing disability identity as a form of social theory that exposes the power relations between able-bodied and disabled people (Siebers 2011, 33). Although from the center of mainstream culture, ideologies such as ableism — the belief that ability is the measure of human worth — are taken for granted and rendered invisible, disability identity can help to make ableism apparent by describing its impact; Siebers speaks to the power of minority identity to uncover ideology when he writes that the lives of those on the margins “create identities and perspectives, embodiments and feelings, histories and experiences that stand outside of and offer valuable knowledge about the powerful ideologies that seem to enclose us” (Siebers 2011, 8). In this formulation, suffering becomes not an impetus toward narcissism and enclosure in the individual self, but a way of identifying the injustices that cause one’s pain (Siebers 2011, 190). Moreover, a disability identity is not about embracing suffering, but about understanding, analyzing, and critiquing the social structures that cause it (Siebers 2011, 190). The social theory inherent in disability identity, Siebers believes, can lead disabled people to realize that their personal suffering is shared and to join together to create safety, community, and justice (Siebers 2011, 193).

In construing identity as social theory, Siebers moves beyond strong social constructionism into philosophical realism in a way that is very promising for both academic theory and on-the-ground activism. Strong social constructionism, according to Siebers, poses social identity as a construct, but tends to see it as a linguistic representation first and foremost, not as a mode of political analysis and activism (Siebers 2011, 55-56). According to philosophical realism, however, it is precisely because our identities are social constructs that they provide a great deal of information necessary to social analysis and activism. Siebers writes:

Realists, like social constructionists, believe that reality is socially produced. Unlike social constructionists, they believe that social reality, once made, takes on a shape, politics and history that belong to the realm of human action, and as part of human action, it is available for rational analysis and political transformation. (Siebers 2011, 82)

Up to now, I’ve been a dyed-in-the-wool social constructionist, but I’ve always felt somewhat limited by it. The strength of social constructionism lies in its dual understanding that we cannot view bodies outside of culture, and that this insight, in and of itself, is liberating. To some extent, I agree that the core insight offered by social constructionism frees one’s mind from essentialist notions of disability, but as Siebers points out, one can easily become stuck in the individualistic notion that one’s liberation depends on intellectual and emotional clarity (Siebers 2011, 79-80). Much more is needed. Social constructions have a constant impact on the lives of human beings — an impact that we can analyze, work with or against, and change.

In further developing his analysis of identity as social theory, Siebers posits the concept of the “social body,” the body for whom shared spaces are designed — or not designed (Siebers 2011, 85). By looking at the body in this way, Siebers notes, one can easily see the lines of inclusion and exclusion drawn by the architects of architectural and social locations (Siebers 2011, 124-125). I can attest to the power of this way of approaching constructed spaces. With the paradigm of the social body in mind, I now look at a building with stairs but no wheelchair ramp, and I see a building designed for a social body that can easily walk on two legs. When I walk by a building in my town with a sign that reads “Handicap Access: Back of Building,” I am reminded that the front entrance of the building was designed for a social body that is allowed to use the front door, and that another form of the social body must use the back door. In a particularly stunning section of the book, Siebers himself literally brings home his analysis by determining the nature of the social body that is welcome in his own house. After observing such indicators as the width of the doorways, the number and locations of staircases, the heights of cabinets, and the placement of doorknobs and light switches (Siebers 2011, 85-88), he concludes that the social body for whom his house was designed is limited indeed:

In sum, people in wheelchairs, people with diminished sight and hearing, those with difficulty climbing stairs, people uncomfortable reaching high or bending low, and those unable to grasp objects do not fit easily in my house. Nimble six-footers, with an intuitive sense of dark spaces, acute hearing, and a love of staircases do. These are social facts readable in the blueprint of my house. (Siebers 2011, 88)

For me, one of the most powerful aspects of the concept of the social body is that it makes all bodies visible. No body can appear to be “natural” or “neutral.” As Phil Smith notes, under the pressure of social critique, normalcy cannot simply fade into the background as an uncontested category, utterly taken for granted, its privilege and power hidden (Smith 2004, 13). Some bodies are included, and others excluded — not by nature, but by design. Thus, rather than allowing ourselves to think in terms of inclusion and exclusion, a dichotomy that always presupposes a group in the center holding power over a group in the margins, Siebers suggests thinking in terms of accessibility and inaccessibility (Siebers 2011, 94). And so we must ask the questions: On behalf of which social body has a space been made accessible? For which social body is it inaccessible? These questions help to move the focus from individuals who must fear exclusion to the concept of a social space in which no one has the power to deny entrance to anyone else.

Ultimately, though, the concept of the social body does not heal the differential in the human rights granted to disabled and non-disabled people. How do we mend that rift? Siebers’ answer is both simple and profound: If we recognize the fragility of human life as a common inheritance, then disability becomes central to human life, and not its tragic flaw. Because all bodies are vulnerable to injury, illness, and age, disability is not the exception, but “a defining characteristic of human beings” (Siebers 2011, 178). Once we represent disability as a common human experience, it becomes much more difficult to justify withholding rights because of physical difference. As Siebers puts it so eloquently:

What difference to human rights would it make if we were to treat fragility, vulnerability, and disability as central to the human condition, if we were to see disability as a positive, critical concept useful to define the shared need among all people for the protection of human rights? (Siebers 2011, 180)

Moreover, in seeing fragility as central to human life, Siebers argues that we can come to see that independence and dependence are both poles of a false dichotomy — a dichotomy that derives from an individualist paradigm untrue to the nature of humanity. This paradigm, Siebers believes, must make way for a new framework that stresses interdependence, because even those who possess (at least temporarily) what our culture considers normative bodies have a mutual dependence upon one another (Siebers 2011, 182-183). I could not agree more. All human beings must cooperate in such activities as buying and selling goods, constructing buildings, growing food, and raising children. Human society depends upon people benefiting from goods and services that no one person can create alone. Our lives depend upon such interdependence.

The ever-present fact of the fragility of human life is one that our culture turns from in its zeal to celebrate strength, youth, and able-bodiedness. Thus, when disabled people rely upon others for care or assistance, it is considered a loss of dignity and a source of shame. One of the most powerful messages of Siebers’ book is that such a response is neither realistic nor inevitable. His work invites us to consider the transformation in human society that would occur if the reliance of a disabled people upon other human beings were considered neither a shameful nor a tragic turn of events, but a reminder that all human beings rely upon one another for protection, for sustenance, and for life itself.

References

ABC10 News. “Boy, 4, Allegedly Killed By Mother Identified.” http://www.10news.com/news/boy-4-allegedly-killed-by-mother-identified. April 3, 2012. Accessed October 14, 2012.

Baron-Cohen. “Theory of mind in normal development and autism.” Prisme 34 (2001): 174-183. http://www.autism-community.com/wp-content/uploads/2010/11/TOM-in-TD-and-ASD.pdf.

Linton, Simi. Claiming Disability: Knowledge and Identity. New York, NY: New York University Press, 1998.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Siebers, Tobin. Disability Theory. Ann Arbor, MI: University of Michigan Press, 2011.

Smith, Phil. “Whiteness, Normal Theory, and Disability Studies.” Disability Studies Quarterly 24, no. 2 (2004): 1-24. http://dsq-sds.org/article/view/491/668.

© 2012 by Rachel Cohen-Rottenberg

The following is my third and final critical annotation for the semester.

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In Stigma: An Enigma Demystified, Lerita M. Coleman Brown enters into an exploration of the nature of stigma and the ways in which it operates, both within individuals and in the society at large. As a professor of psychology at Agnes Scott College, Brown specializes in the subjects of stigma and identity, and she uses her expertise to place the process of stigmatization in its social context. Beginning with Erving Goffman’s characterization of stigma as an “undesired differentness” (Goffman 1963, cited in Brown 2010, 179), Brown explains stigmatization with reference to three mutually reinforcing processes:

1) An “affective” process, in which fear becomes attached to difference (Brown 2010, 182-183)

2) A “cognitive” process, in which the mind’s ability to socially categorize other people devolves into degrading stereotypes that blot out individual characteristics and devalue members of a group as inferior to others (Brown 2010, 183-185)

3) A “behavioral” process, in which people use stigma to rationalize exploitation and exclusion, and to maintain majority-minority power relationships (Brown 2010, 185-187)

While Brown does not focus solely on disability, her analysis provides a number of useful tools — and raises a number of challenging questions — for those of us engaged in the project of attempting to destigmatize disability.

Because stigma is based on fear and perpetuated by fear — and because most people fear disability, pain, and illness — attempts to create visual and textual representations that reduce the fear of disability involve significant challenges. However, in approaching such attempts, we can take heart in knowing that fear is not a “natural” response to difference. As Brown notes, young children generally respond to difference with interest, and are only taught fear by their teachers and caregivers through a process called “self-referencing” — described by Brown as “the use of another’s interpretation of a situation to form one’s own understanding of it.” (Brown 2010, 182) In other words, children learn how to respond to difference by noting the responses of those around them. A similar process happens, throughout the lifespan, in the presence of authority figures; many people look to others to see how they should respond (Brown 2010, 182-183). These experiences can be quite powerful, and they have the potential to create deeply stigmatizing responses. For example, a parent who responds to a child’s healthy interest in a person using a wheelchair by pulling the child away creates fear and discomfort about difference.

Given that our earliest response to difference is interest, we might consider using representation to interrupt the fear reaction and bring people to see difference as interesting, positive, and a sign of diversity. In other words, we might use disability representation in order to move people back into an earlier state of response — into a genuine interest in physical differences and the ways in which people navigate with them. After all, representations are a powerful form of self-referencing, for good or for ill, and can create positive valences in addition to negative ones; people get a great deal of their information about how to look at others through print and visual images. As Bernice Pescosolido and her colleagues note regarding the impact of popular media on the stigma attached to mental illness, “information about mental illness learned from a lifetime of media use will be a source of stereotypes, impacting judgments people make in their everyday life when they encounter situations related to mental illness, mental health care, or persons with mental illness.” (Pescosolido et al. 2008, 435)  So, if we can change depictions of disability from vehicles of judgment to vehicles of respectful interest in how other people live, we might be able to reinforce positive attitudes and disempower stigmatizing ones.

Even if we can counter stigma with positive disability representation, however, doing so will not erase the fact that many nonstigmatized people will resist letting go of their stigmatized perceptions of others for fear that they themselves might become stigmatized. As Brown notes, anyone can become stigmatized at any time, because a stigma is an index of how far one deviates from the normative social categories created by those in the majority (Brown 2010, 180). Given that social norms can change from culture to culture, from one historical period to another, and from one situation to another, anyone can be stigmatized given a changed set of circumstances (Brown 2010, 180). Thus, the fear of being stigmatized serves to keep stigma in place: in the logic of stigma, if one group is stigmatized, those in another group are safe, but if a stigma is removed from one group, then it can adhere to others. As Brown observes, “most people want to ensure that they are counted in the nonstigmatized ‘majority.’ This, of course, leads to more stigmatization.” (Brown 2010, 181) Given the influence that the fear of stigma wields over the lives of most people, how does one convince nonstigmatized people to give up the illusion of safety?

One strategy might be to simply confront the fact of stigma — to show what stigma looks like, to hold it up before people’s eyes, to break through the denial and say, “Being stigmatized could happen to any of us.” This kind of work might come from people who acquired a disability identity later in life, and who have become conscious of the shift from a nonstigmatized to a stigmatized identity. I am one such person — among many, many others — who can attest to the sudden and disorienting impact of stigma. When I was diagnosed with Asperger’s Syndrome in November of 2008, I quickly became aware that I had moved from a nonstigmatized class to a stigmatized one. I was no different in the minute after my diagnosis than I had been the minute before, of course, and yet, my sense of the way in which the world saw me had changed completely.

Consider, for example, my sense of my own abilities: As a child, I learned to read very early, teaching myself to read at the age of three, and in adulthood, I became a professional writer. From my childhood onward, many people gave me praise for my gifts with written language. I had always considered these gifts core to my identity and to my sense of my self-esteem. Imagine my surprise, then, to find that after my diagnosis, such gifts were dismissed as “splinter skills,” a form of overcompensation for my challenges with verbal speech and auditory processing, and indications of my non-normality. It took me some time to recover from the language of deficit and to assert my gifts as gifts, but I am always aware that the stigma remains in the eyes of others. So, as a person who has been fortunate in having a successful professional life and became stigmatized despite it, I can attest to the absurdity of the common misconception that, as Robert Murphy so sarcastically put it about disability in general, “Such things are only supposed to happen to life’s losers.” (Murphy 1990, 126) Like most privileged people, I had labored for most of my life under the illusion that I could escape stigma. My experience has taught me otherwise.

One of the most powerful ways, then, to confront the fact of stigma is for disabled people to take control of our representations, and to speak the truth of our own experiences. But who should be our primary audience? Should we try to change hearts and minds among able-bodied people, or should we begin by addressing other disabled people and attempting to root out stigma in our own thinking? This question is crucial because, as Brown observes, one of the primary dangers of stigmatization is the way in which stigmatized people begin to view themselves through a distorted lens:

The most pernicious consequence of bearing a stigma is that stigmatized people may develop the same perceptual problems that nonstigmatized people have. They begin to see themselves and their lives through the stigma, or as Sartre (1948) writes about the Jews, they “allow themselves to be poisoned by the stereotype and live in fear that they will correspond to it” (p. 95). (Brown 2010, 186-187)

Given the destructive impact of stigma on self-identity, it seems that one course is to concentrate on using disability representation to counter the impact of stigma on disabled people. In our representations, we might foreground the truth that, as Brown points out, stigma does not originate within individuals, but within social contexts, and that we can struggle to change the norms governing those contexts, much in the way that Rosa Parks helped to change the stigma that African-Americans were worthy to sit only in the back of the bus (Brown 2010, 180).

This kind of work is already being done by a great number of disabled people, including those involved in the project Envisioning New Meanings of Disability and Difference, which showcases the self-representation of disabled artists. In a particularly powerful piece, Jes Sachse, a woman with Freeman-Sheldon Syndrome, poses nude and invites the viewer to self-identify — to share both her fear of exposing her disabled body and her love for herself. “I want you to be scared,” she says. “I want you to look at these photos and see you, and I want you to imagine loving it all.” (Envisioning 2012) These kinds of representations are particularly important to disabled people because, as Brown points out, one of the ways in which society enforces stigma is through “social isolation and lowered expectations.” (Brown 2010, 186) How are we to break through this isolation and see the possibilities for our lives if not by representing the truths of our lives to one another?

When all is said and done, changing the ways in which we represent disability may help to destigmatize disability to some degree, but it will not erase the problem of stigma altogether. Brown’s piece raises a number of unanswered questions about the origins of stigma: Why do people feel the need to feel superior to others? Why do people attach a negative valence to difference? Why do people need to rationalize exclusion and injustice with recourse to stigma? (Brown 2010, 189-191) Until we begin to explore these questions, changing disability representations will create improvement, but will not afford us a long-term solution. As Susan Wendell writes about the knowledge that comes with the disability experience, “I suspect that any culture that stigmatizes and fears disability would rather ignore and suppress that knowledge than make the changes necessary to absorb it. It may have to be cultivated separately until non-disabled society is transformed enough to receive and integrate it. “ (Wendell 1996, 75) Until that time comes, I hope that we, as disabled people, will keeping finding the courage to speak to one another about the truth of our experiences in all of their manifestations.

Sources

Brown, Lerita M. Coleman. “Stigma: An Enigma Demystified.” In The Disability Studies Reader, edited by Lennard J. Davis, 179-192. New York, NY: Routledge, 2010.

Envisioning New Meanings of Disability and Difference. http://www.envisioningnewmeanings.ca/. Accessed June 15, 2012.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Pescosolido, Bernice A., Jack K. Martin, Annie Lang, and Sigrun Olafsdottir. “Rethinking theoretical approaches to stigma: A Framework Integrating Normative Influences on Stigma (FINIS).” Social Science & Medicine 67, no. 3 (2008): 431-440. doi: 10.1016/j.socscimed.2008.03.018.

Wendell, Susan. The Rejected Body: Feminist Philosophical Reflections on Disability. New York, NY: Routledge, 1996.

© 2012 by Rachel Cohen-Rottenberg

The following is my second critical annotation for the semester.

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In the paper “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability,’” Margaret Byron and her colleagues discuss a study they carried out to assess the concepts, descriptors, and images that medical students associate with disability. With a twofold purpose of understanding how better to teach medical students about disability and determining whether a short course would change the way that medical students think about the issue, the researchers analyzed the words that students associated with disability before and after a four-day course. They found that before the course, the students tended to use negative and depersonalizing terms associated with loss, victimization, and the medical model of disability (which holds that disability derives solely from impairment in the body), and that afterward, they tended to use more positive terms associated with personal empowerment and the social model of disability (which holds that disability is the result of inaccessible architectural and social environments). While the authors’ research is cause for cautious optimism about the potential of a disability course to change hearts and minds, Byron and her associates fall short of a more rigorous analysis that would move past the problem of language and into the social construction of disability that underlies language. In the study, this problem manifests itself in three ways: in the uncritical assumption that certain words, when applied to disabled people, are inherently positive or negative; in the idea that one should attempt to see the person, not the impairment; and in the ways in which the students interacted with disabled people.

At the time of the study, the lead researcher, Margaret Byron, was a Senior Lecturer in Disability at the University of Bristol and the Project Director for Partners in Practice, where she worked to create equality in healthcare for disabled people; not surprisingly, her aims in the larger world inform the purpose and the methods of her research. For the study, carried out between 1996 and 2000, four sets of students participated in a four-day course taught by fourteen different teachers, eleven of who were disabled. While 381 students began the course, only 189 completed it. Before and after the course, the students wrote down two words that they associated with disability. Two professionals associated with the course used statistical analysis to analyze the words according to frequency of use and a series of dichotomies that consisted of a) symbolic icons versus personal qualities, b) the language of loss and deficit versus the language of empowerment and ability, and c) the medical model versus the social model. The purpose was to discover whether the words the students associated with disability changed after they had participated in the course. In 1999, the researchers also held a focus group before and after the course, in which a small number of students participated in open-ended discussions on disability issues (Byron et al. 2005, 176-179).

The results of the study showed a shift in the students’ associations with disability from concepts embedded in the medical model to those embedded in the social model. Before the course, the majority of the words used ten times or more included words associating disability with pity, difficulty and suffering, while after the course, the majority of the words used ten times or more were associated with empowerment and independence (Byron et al. 2005, 179). Moreover, the dichotomies shifted significantly. The use of depersonalized visual icons to describe disabled people (“wheelchair,” “white stick,” “orange badge,” “bobbles on the pavement”) shifted from 29% of the words to 7%, while terms associated with personal qualities increased (Byron et al. 2005, 180-182). In fact, terms denoting what the authors call “positive” personal qualities (“strength,” “capable,” “real people,” “normal person,” “your average Joe”) increased by 44% and terms associated with what they deem “negative” personal qualities (“dependence,” “inadequate,” “suffering”) decreased by the same amount (Byron et al. 2005, 180-182). In addition, words associated with loss and deficit decreased by 33%, while words associated with empowerment increased by 42% (Byron et al. 2005, 180). The shift was summed up in a 27% decrease in the use of the medical model, and a 39% increase in the use of the social model (Byron et al. 2005, 180). While noting that these changes might have derived simply from the students parroting back new concepts after the course, the researchers conclude that the changes are inherently positive and bode well for future courses on helping medical students view disability differently (Byron et al. 2005, 182-183).

From my perspective, however, a failure to grapple with several core issues makes the researchers’ conclusions questionable. For example, the study suggests that the term “normal person” has positive implications (Byron et al. 2005, 182), while the word “dependence” has negative implications (Byron et al. 2005, 180). But only in an ableist society would the word “normal” carry a positive valence; as Lennard J. Davis points out in “Bodies of Difference: Politics, Disability and Representation,” the concept of normal exercises a great deal of social and psychological tyranny over people’s lives because it is a simply a statistical average and a social construct that cannot be attained by anyone. As Davis writes, the construction of the category of normal creates the marginalization of disabled people:

Under normalcy, no one is or can be normal, just as no one is or can be equal. All have to work hard to make it seem that they conform, and so the person with disabilities is singled out as a dramatic case of not belonging. This identification makes it easier for the rest to think they fit the paradigm (Davis 2002, 105).

Moreover, only in an ableist society, in which the values of individualism and independence are held in high esteem, could a term like “dependence” take on a negative valence. Dependence on others for help need to not be seen as infantilization, helplessness, or tragedy, but as an indication of the interdependence of all human beings and as a reflection of a basic human need for assistance and comfort. The failure of the study to investigate the implications of these types of words lessens its usefulness is terms of understanding how to change thinking about disability.

In addition to not addressing the ableist implications of words deemed “positive” or “negative,” the authors of the study fail to consider one of the most troubling aspects of the ways in which people have attempted to address the issue of terminology: an insistence upon person-first language. The logic of person-first language is to put the person before the disability; proponents of person-first language use the term “person with disabilities” rather than the identity-first language of “disabled person.” The underlying idea of person-first language is that one should “see the person, not the disability.” The study by Byron and her associates echoes this kind of thinking; in commenting upon the students’ increased use of terms describing “positive” personal attributes, the authors note that this outcome “fit well with the aims of the course, which were that the student should see the person, not the impairment, and should understand the social model of disability” (Byron et al. 2005, 182). However, inherent in person-first language is the implication that disabilities render one less of a person. After all, why say, “See the person, not the disability” rather than “See the person and the disability,” unless disabilities seem somehow dehumanizing? Moreover, person-first language asks the speaker to not see what is already apparent: a difference that has a significant impact upon a disabled person’s everyday experience. This type of denial is not a feature of the social model of disability, whose adherents tend to prefer identity-first language and to be seen as fully human with their disabilities, not despite them (Shakespeare 2010, 268-269). Thus, in their uncritical acceptance of the imperative to separate the person from the disability, the researchers fail to address the negative view of disability that underlies this approach and do not realize the extent to which it conflicts with the social model.

Finally, while the authors seek to break down barriers between medical students and disabled people, they do so in a way that continues to make disabled people seem alien and apart. For example, they provide opportunities for the students to interact with disabled people, but their methods make these visits akin to a special field trip or exhibit. The point of the interactions seems to be for able-bodied students to learn about the patients’ disabilities, not to befriend them, to spend time with them on their own terms, or to learn about their lives as disabled people in an exclusionary society. Instead, the emphasis is medical — which is understandable, given the context, but not particularly useful in terms of changing perceptions of disabled people as simply having defective bodies in need of care. The response by one student in a focus group shows the continued impact of the medical model even after a four-day course based on the social model. The student depersonalizes the disabled people she had come into contact with during the course by referring to them by their disabilities only: “It’s good that you can kind of pick what you enjoy doing. Like today you could have picked either learning, or vision or hearing and you can pick what you enjoy and what you want to learn more about, which is good.” (Byron et al. 2005, 182) In other words, the student learned about the patients’ medical conditions — their learning challenges, their sight, their hearing — rather than about the patients as whole people in a social context.

No amount of changing the language about disability will change the position of disabled people in society without serious attention paid to underlying attitudes. While I applaud the work being done to help people talk about disability differently, that work is only the beginning of a long process of understanding how people think about disability and why. As S.E. Smith writes in “Language Matters, But It’s Not the Most Important Thing,” the issue “isn’t the word, it’s what lies behind it. It’s what the word reinforces and reveals.” (Smith 2011)

Sources

Byron, Margaret, Zoë Cockshott, Hilary Brownett, and Tina Ramkalawan. “What does ‘disability’ mean for medical students? An exploration of the words medical students associate with the term ‘disability’.” Medical Education 39 (2005): 176–183. doi:10.1111/j.1365-2929.2004.02062.x.

Davis, Lennard J. “Bodies of Difference: Politics, Disability and Representation.” In Disability Studies: Enabling the Humanities, edited by Sharon L. Snyder, Brenda Jo Brueggemann, and Rosemarie Garland-Thomson, 100-106. New York, NY: Modern Language Association of America, 2002.

Shakespeare, Tom. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennard J. Davis, 266-273. New York, NY: Routledge, 2010.

Smith, S.E. “Language Matters, But It’s Not the Most Important Thing.” This Ain’t Livin.’ February 24, 2011. Accessed May 20, 2012. http://meloukhia.net/2011/02/language_matters_language_matters_but_its_not_the_most_important_thing.html.

© 2012 by Rachel Cohen-Rottenberg

The following is a critical annotation I recently wrote for my graduate coursework.

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In his thought-provoking 2011 article, “The Rhetoric of Ableism,” James L. Cherney discusses the ways in which rhetoric creates and perpetuates the ideology of ableism, a set of beliefs and practices that make the able body the sine qua non of human worth and happiness. He argues that discrimination against disabled people is supported by the ways in which ableism is embedded in textual and visual representation, and that the project of deconstructing the rhetoric of ableism must take its place alongside activism that targets specific instances of discrimination. By analyzing ableist rhetoric, Cherney believes, scholars and activists can understand not only how ableism is perpetuated, but also how other forms of oppression are reinforced by similar tropes. He concludes that a thoroughgoing analysis of current rhetoric can result in neologisms that interrupt and transform ableist representations.

The author is an assistant professor in the Department of Communication at Wayne State University, where his areas of specialization include rhetoric and critical theory, particularly with reference to disability and the disability rights movement. In his article, he makes clear his desire to bring his expertise in the field of rhetoric to bear on the discrimination that disabled people face. Given that his interests are political, rhetorical, and ethical, he bases his analysis on the work of two thinkers whose interests mirror his own: Stuart Hall, a rhetorician concerned with the relationship between rhetoric and ideology (Makus 1990, 495), and Stephen Toulmin, a moral philosopher whose work focused, in part, on how human beings construct arguments (Stygall 1987, 96-98). Drawing from Hall’s definition of ideology as “the concepts and the languages of practical thought which stabilize a particular form of power and domination” (Hall 1996, 26, cited in Cherney 2011, 2), Cherney concerns himself with addressing the problem of how to critique ideological claims about disability that are considered self-evident and thereby outside the realm of rhetorical analysis. To address this issue, he begins with Toulmin’s definition of a “warrant” as a “self-authorizing statement” (Toulmin 1984, 46, cited in Cherney 2011, 5), and creates the concept of “rhetorical norms” — knowledge claims that are considered obvious and beyond analysis (Cherney 2011, 5). He then discusses three examples of widely accepted ableist rhetorical norms: “deviance is evil,” “body is able” (a reference to the notion that all ability resides in the body, rather than in the relationship between the body and the social/architectural environment), and “normal is natural” (Cherney 2011, 5-7).

As a writer interested in how language creates culture, a disability-rights activist whose primary mode of activism is the written word, and a person sensitive to the power of language, I am especially interested in the ways that Cherney articulates the problem of ableist thinking as rhetoric that poses as arhetorical, placing itself outside the realm of critique. In Cherney’s view, ableism is an exceptionally difficult ideology to name and to reject because it is “that most insidious form of rhetoric that has become reified and so widely accepted as common sense that it denies its own rhetoricity — it ‘goes without saying.’” (Cherney 2011, 2) For instance, in the minds of most people, it is simply a given that disabled people should become as able-bodied as possible. When attempting to critique such an idea, whose truth appears obvious, one comes up against charges of absurdity, as Cherney found when one of his professors attempted to dismiss his analysis of pervasive ableism with the retort “Next you’ll be telling me that those stairs discriminate!” (Cherney 2011, 4) Of course, the stairs do discriminate — against anyone who cannot walk. Moreover, Cherney addresses the ways in which purveyors of ableist rhetoric pose as value-neutral while leveling the accusation of partisanship at those who critique their rhetoric (Cherney 2011, 4) — a common experience for those of us who critique mainstream scientific or cultural work. I have often found myself stymied as to how to address rhetoric pretending to be above rhetoric; Cherney’s analysis is a reminder that, because all language supports ideological agendas and power relationships, the key is to a) critique how language works to uphold structures of power and b) create expressions that counter ableist representations.

With regard to creative expression, Cherney suggests that, in order to deconstruct ableism, it is not enough to engage in analysis; we must construct a new language. In a particularly apt turn of phrase, he writes, “Identifying ableism requires rhetorical invention, for to critique a rhetoric that goes without saying requires new words.” (Cherney 2011, 8 ) While Cherney lists a number of strategies that counter ableist tropes — disability narrative, critiques of mainstream cultural productions, new disability histories (Cherney 2011, 2) — he does not provide examples of what a new language might look like. However, he opens up the potential for new rhetoric by suggesting that, in our quest for a new language, we will uncover ableist rhetorical norms used against other minority groups (Cherney 2011, 10). While he does not follow up on the implications of analyzing the ways in which disability is deployed against other marginalized people, it seems to me that such a process can, indeed, lead us in the direction of creating the neologisms he hopes for.

Consider the parallels between cultural representations of genderqueer people and disabled people. In popular culture, genderqueer people are not only marginalized as a gender minority, but also by means of ableist rhetoric. For example, as discussed in the Questioning Transphobia piece “Radio Show Hosts Incite Abuse Against Trans Children,” a 2009 Sacramento, CA radio show featured two hosts referring to children with gender dysphoria as “idiots” and “freaks.” In coming up against this rhetoric, one might reflect on why it is used in this context. What is it about genderqueer and disabled people that brings out charges of freakishness? One area of commonality is that both groups are outside the easy dualisms that most people take for granted. Genderqueer people do not fit the gender binary, and this fact calls forth a great deal of hostility, as reflected by the responses to an article about “X” being added as a gender option on Australian passports. As noted in the article “Freaks and Perverts” on the A.E. Brain site, one reader said in response to the new category, “Male or female, that’s it! Don’t confuse yourself with another!” and a second said, “Sorry. Their [sic] are only two genders, male and female. Period. No debate. Deal with it.” This rejection of people who do not fit into an accepted dualistic paradigm brings to mind Robert Murphy’s analysis of the ways in which disabled people occupy a similarly liminal space in society at large, outside of the binaries that able-bodied people take for granted:

The long-term physically impaired are neither sick nor well, neither dead nor fully alive, neither out of society nor wholly in it… They are not ill, for illness is transitional to either death or recovery… The sick person lives in a state of social suspension until he or she gets better. The disabled spend a lifetime in a similar suspended state. They are neither fish nor fowl; they exist in partial isolation from society as undefined, ambiguous people (Murphy 1990, 131).

The fact that so many people feel such visceral discomfort and hostility toward anyone who goes outside of accepted dualisms raises the following questions: Would the problem be ameliorated by creating new language that is non-dualistic? Is it possible to create such language? Can we create new language that communicates ease with ambiguity and acceptance of paradox? And how might we critique the dualities in our own thinking?

Along these lines, it is worth pondering the ways in which Cherney helps to collapse the dualism between theory and practice. He is quite adamant in his view that theory — analyses of rhetoric and the ways in which ableism pervades our thinking — must be integrated into the disability rights struggle, for the simple reason that the ways in which we think about the world and the questions we ask determine the solutions we find. He makes an excellent case for combining the fight against specific instances of discrimination with the struggle against the views that inform them:

Because attacking the target requires forging coalitions with those who may oppose the target for other reasons, this strategically important move can actually help protect the underlying oppressive orientation from discovery, and eliminating the target can be confused with eliminating the oppressive view… Yet naming and calling into question the view itself raises the possibility of altering the very strands out of which the oppressive institutions are spun (Cherney 2011, 9).

Thus, in Cherney’s formulation, disability theory becomes an important component of the disability rights struggle — not simply a precursor or an academic exercise, but an integral part of the process. And certainly, the struggle itself generates its own theories and frameworks; after all, the social model of disability, a term coined in 1983, grew out of the activism of the Union of Physically Impaired Against Segregation (UPIAS) (Shakespeare 2010, 266). A dialectical view of the relationship between theory and practice reveals that practice generates theory, and that theory is part and parcel of practice.

Paradoxically, in its call for new kinds of rhetoric, Cheney’s analysis invites us to investigate the silences that surround the rhetoric we have. If ableist rhetoric is silent about the socially constructed nature of its assumptions, bringing those assumptions out into the open creates the possibility for speaking to the power relationships that underlie them. And given that ableist rhetoric attempts to silence its critics by diminishing their perspectives as partisan and absurd, we must consider all the ways to resist that silencing. Do we push up against it with words alone? With visual representation? Or do we simply assert the undeniable reality of our own bodies?

Sources

A.E. Brain. “Freaks and Perverts.” http://aebrain.blogspot.com/2011/09/freaks-and-perverts.html. September 15, 2011. Accessed April 23, 2012.

Cherney, James L. “The Rhetoric of Ableism.” Disability Studies Quarterly 31, no. 3 (2011). http://dsq-sds.org/article/view/1665/1606.

Hall, Stuart. “The Problem of Ideology: Marxism Without Guarantees.” In Critical Studies in Cultural Studies, edited by David Morley and Kuan-Hsing Chen, 24-45. London, England: Routledge, 1996.

Makus, Anne. “Stuart hall’s theory of ideology: A frame for rhetorical criticism.” Western Journal of Speech Communication 54, no. 4 (1990): 495-514. doi: 10.1080/10570319009374357.

Murphy, Robert Francis. The Body Silent. New York, NY: W.W. Norton & Company, Inc., 1990.

Questioning Transphobia. “Radio Show Hosts Incite Abuse Against Trans Children.” http://www.questioningtransphobia.com/?p=1443. June 3, 2009. Accessed April 23, 2012.

Shakespeare, Tom. “The Social Model of Disability.” In The Disability Studies Reader, edited by Lennard J. Davis, 266-273. New York, NY: Routledge, 2010.

Stygall, Gail. “Toulmin and the Ethics of Argument Fields: Teaching Writing and Argument.” Journal of Teaching Writing 6, no. 1 (1987): 93-107. http://journals.iupui.edu/index.php/teachingwriting/article/viewFile/835/807.

Toulmin, Stephen, Richard Rieke, and Allan Janik. An Introduction to Reasoning. New York, NY: Macmillan, 1984.

© 2012 by Rachel Cohen-Rottenberg